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Friday, September 06, 2013

TOP STORY >> Mother helps autistic daughter sing her own song

Story and Photos by STAFF SGT. JAKE BARREIRO
19th Airlift Wing Public Affairs

Master Sgt. Beth Jungk is a 19th Communications Squadron plans and programs manager at Little Rock Air Force Base. Her daughter, Morgan, 14, has been diagnosed with autism, epilepsy, kabuki syndrome and other ailments. Morgan’s disabilities mean any deviations from her daily routine can be challenging.

I first met Beth and Morgan while covering the Arkansas Special Olympics in May. Beth is the head coach and organizer of the base’s Special Olympics team. Even though I could interact with the two intermittently over the din and bustle of the three-day event, I saw a close relationship: a mother dedicated to her daughter and a daughter who needs that kind of commitment not just to survive, but to mature and grow as a person.

As the school year approached, I thought about how hard it must be for Morgan, who Beth said doesn’t understand the concept of time as others do, to go from the loose possibilities of summer to the structured school days of fall. I spent a little over a week documenting Beth’s and Morgan’s morning routine for her first week of school.

Before the school year started, Beth tried to introduce her daughter to the idea of going back to school, including taking her to Middle School North’s orientation night. She said that, before this year, Morgan always liked school, but resists the idea now. Every time Beth mentioned what Morgan will have to do at school, Morgan said contrarily, “I’m not at school.”

Since seemingly simple routines can take a lot of time for kids with autism, Beth wakes Morgan up earlier on days she has to go to school. On summer days and weekends, Morgan often sleeps in and can take longer during the morning routine, such as waking up, getting dressed and eating breakfast.

This sounds simple, but Beth said mornings can be unpredictable depending on how Morgan acts. Morgan is maturing and undergoing the same physical and emotional changes all teenagers go through, which undoubtedly affect her behavior.

A HECTIC SCHEDULE

Beth, a single mother, has a hectic schedule, juggling personal and professional responsibilities and adapting to unpredictable circumstances. Morgan was first diagnosed with a rare form of epilepsy when she was 18 months old and has had complications ever since.

I arrived at the Jungk household not knowing what to expect. I had only seen and spoken to Morgan twice and wasn’t sure how she would react to me intruding on her life.

Getting a teenager out of bed can be challenging for parents, but getting a teenager with Morgan’s disabilities, already resistant to the idea of school, out of bed can be a marathon of patience, repetition and endurance.

On the morning of her first day of school, Morgan didn’t want to leave her bed, so she hid underneath her pillows. After encouragement from her mother, as well as the family cats, Jax and Bandit, Morgan got up. This is a familiar routine for the cats, who jump onto Morgan’s bed every morning when it’s time to wake up. Jax, 14 years old like Morgan, often lies near her while she’s getting dressed or if she’s upset and hiding.

Once Morgan wakes up, the next step is getting dressed, which provides additional challenges for mother and daughter. Morgan can get her clothes and lay them on the bed, but she can’t put them on herself, so she gets help from her mother.

Beth patiently dresses her daughter in a full outfit every day and brushes her hair while encouraging her and trying to teach her how to do these tasks herself. One morning, Morgan tried to put on a sock but couldn’t fit the fabric around her foot. Beth helped her daughter, who before wouldn’t even try to put the socks on at all. Progress is what’s important for Beth, and, while Morgan may have disabilities, she has a mother who’s dedicated to challenging her and helping her learn new things, even if it’s at a slower pace.

The second morning I was at her house, Morgan turned toward my camera and smiled as she was getting her socks and shoes put on. Beth said Morgan is getting more comfortable with me being around, and I’m feeling like I’m getting a better look at her playful personality.

MORGAN’S BIG SMILE

One morning, Morgan waved to me and smiled right after getting out of bed. At times she’d play games with her mother, holding her shoes out to her as an invitation to take them, only to pull them away when Beth reached for them. Another day, after hiding underneath her pillows, Morgan sprung out of bed and took off running. Her mother chased her to the living room, where she playfully used the table as a barrier. Beth laughed at her daughter’s antics and convinced her to go back to her room. Other times when I was taking a picture, Morgan would look at my camera and say “cheese,” smiling and laughing.

When getting dressed for her first day of school, Morgan rebelled at the idea of going and hid under the bed. Beth patiently approached her daughter and talked to her kindly. Eventually Morgan got back up. Later Beth told me when things like this happen it’s important not to get angry.

“Getting mad or yelling at her won’t solve anything. You have to be patient,” Beth said.

Hiding under the bed or other antics can put Morgan behind schedule before the real unpredictable part of the morning – breakfast.

Some days Beth lets her daughter choose her breakfast because Morgan can be a picky eater and sometimes eats too little. During her first week of school, Morgan mainly eats spaghetti with chicken nuggets in the morning. Breakfast can take a long time some days, and Beth often has to remind Morgan to eat her food, all while getting ready for work herself.

Even though Morgan doesn’t always want breakfast, she must eat in the morning because Beth has to give her several syringes full of medicine for her various ailments. When giving her medicine, Beth tells her daughter what it’s for, and Morgan repeats the words. Even though she winces while taking the medicine, Morgan offers no resistance.

When she picks out her food, Morgan is less likely to shut down and can eat quickly, but she becomes sidetracked when watching TV. Sometimes she’ll recite lines from the show she’s watching and laugh while neglecting her food. After many reminders from her mother, she’ll eat most of her food and take all of her medicine.

Sometimes when she is told to eat, Morgan refuses, shuts down and then crawls into her mother’s lap while crying, seeking comfort. When she does this, Beth embraces her daughter. Beth told me her daughter does this when she’s strongly opposed to something; it’s her way of saying “enough.”

During the week I was with them, Morgan did this twice, and each time her mother hugged her and told her she loved her. Beth’s soothing eventually brought Morgan back from her inconsolable state. Even though it must be hard for mother and daughter to communicate over so many barriers, a simple act and short, kind words seemed to disarm those barriers and bring the two close.

Throughout the morning, Beth often repeats instructions or questions to her daughter, often a dozen times, but she does it with patience. She says people with autism don’t process language as quickly or intuitively as other people and stressed the importance of giving instructions patiently. Routine is important, and any intrusion on the routine can have unexpected consequences.

Since Beth is in the military, mother and daughter have had more intrusions on their routine than most families would. Beth said she’s looking forward to retirement soon because it will give Morgan more stability.

LOVING MOTHER

Beth loves her daughter and is proud of her. She’s always telling me about Morgan’s quirks and ticks, the little things that make all of us who we are.

For instance, Morgan loves to swing while listening to music. There’s a swing in their backyard, and swinging back and forth while listening to music with headphones on is her favorite thing to do. She loves it so much, her mother even made an indoor swing for her to use during bad weather.

When Morgan swings she also sings loudly. Her singing is off key because her disabilities have affected her hearing as well as speech. Beth tells me her daughter will swing for hours at a time. When swinging, Morgan gets so immersed that Beth has to set a timer to remind her to make her daughter use the washroom.

When Morgan swings, she looks and sounds elated, as if she’s in her private haven. Sometimes Morgan wants to swing by herself. One morning, she told Beth, “You go now.” When we were outside while she was swinging. Beth told me this is what Morgan has started saying when she wants to be alone.

Beth isn’t often very far from her daughter, who needs the attention and supervision. I wondered if Morgan, who needs a guardian to look out for her, has the same natural teenage impulses to rebel and seek independence most youths do.

Morgan loves to draw. One morning, Beth showed me the drawings Morgan made during art class, which is her favorite class. In one picture, Morgan traced the colors inside the line, a huge accomplishment for autistic children because they have difficulty with boundaries.

On the days Beth has Morgan ready for school ahead of time, mother and daughter relax before the bus comes as Morgan prefers to swing indoors.

Beth talked to me while her daughter was swinging. Beth told me about her life with Morgan, and why she’s passionate about telling her story.

HELPING MORGAN GROW

“Things like this aren’t going away,” she said. She hopes her story and experiences can help other parents. Beth said she remains determined to help Morgan grow. Progress is what she talks about. She doesn’t think hiding disabled children from the world or “letting them watch the same TV show for six hours again and again” are the right way to treat kids with disabilities like autism.

“You have to treat them like you would any other kid, give them options, let them make choices,” Beth said.

As we waited for the bus to arrive, Beth told me she knows she may be overprotective when it comes to Morgan, but one can’t begrudge those maternal instincts. Raising any child requires major commitment, but being a single mother raising one with Morgan’s disabilities requires extra attention and dedication. After all, even at 14, Morgan’s mother still dresses her and can’t leave her unsupervised for long.

“It’s been us against the world,” Beth said.

She recognizes Morgan’s need for more responsibility and tries to teach her practical survival skills, like making a meal, putting on socks and shoes or putting away silverware. She said it’s hard for her to do sometimes, but she knows Morgan needs to be exposed to the world and not just kept in a life of secure limits.

When the bus arrived the last day of the school week, Beth helped Morgan don her backpack and walked with her out to the bus. She told her daughter goodbye as Morgan climbed the steps and found her seat. When Morgan sat down, Beth waved to her daughter, and Morgan looked back at her mother out the window, waving goodbye.